Peace of mind for special needs families

Shalva stands out among institutions that treat children with special needs because it invests in the parents as well as the kids. Until her seventh child was born nearly two years ago, Naama Tzuriel didn’t spend too much time thinking about how to nurse her children, whether to sing to them, or which game to play with them.

But after giving birth to a daughter with Down’s syndrome, that Tzuriel soon came to realize that she now needed to facilitate her daughter’s development rather than waiting for her child to lead the way.

The need to learn how to be a mother all over again brought Tzuriel, a 39-year-old nurse from Alon Shvut, to Shalva, an award-winning Israeli organization in Jerusalem that aims to provide peace of mind to mentally challenged children and their families.

Tzuriel and her daughter Chana participate in a weekly program called “Me and My Mommy,” which involves mothers in their children’s treatment – including massage and hydrotherapy – and provides an informal support group by allotting the mothers half an hour each session to drink coffee and chat.

Shalva has helped Tzuriel learn the importance of eye contact and of speaking to Chana from a young age, and “how to be an initiator in Chana’s development rather than be passive,” she said.

It is the focus on helping families cope with the disabilities, in addition to treating the children themselves, that makes Shalva unique, said Prof. Malka Margalit, who researches developmental and learning disabilities at Tel Aviv University’s Constantiner School of Education. Margalit has spent the past two years studying Shalva and has co-written an article on the subject that will be published next year in the Journal of Policy and Practice in Intellectual Disabilities.

Shalva, which means “serenity” in Hebrew, serves more than 400 people with disabilities. Its youngest participants are the babies in the Me and My Mommy program; some, like Chana, begin when they are only a month old. The oldest participant is 34; she is in an evening social program for adult women with disabilities.

Other programs include a newly established kindergarten, afternoon activities such as drama and music classes, summer camp, and overnight and weekend stays – which provide a needed respite for frequently overburdened parents, who can use the time to rest or pay more attention to their other children. There is also a separate center in Alon Shvut, a settlement south of Jerusalem, that opened in 2001 and serves nearly 30 children.

To ensure that children are not accepted based on financial criteria, parents are not asked to pay for the program, which costs $3 million a year to run, said Kalman Samuels, founder and director of Shalva. The Israeli government supplies 10 percent of that money and the rest comes from donations, mainly from the United States, he said. Due to a lack of funding and space, more than 100 families are on the waiting list.

In May, Samuels and his wife Malki won the Jerusalem Foundation’s Teddy Kollek prize for leadership in public service, for their work with Shalva. It was the fifth award won by Shalva or people involved with the organization in the last year alone.

There are several good institutions that treat children with special needs in Israel, said Margalit, but Shalva stands out because it invests a lot in “the feelings of parents.”

“The uniqueness is [that Shalva does] not just focus on the difficulties of the child, with his learning and developmental disabilities, but on how to empower parents to cope better,” she said.

Perhaps the primary reason for Shalva’s emphasis on parents is that it was developed by parents of a child with disabilities, with the goal of helping other parents.

Kalman and Malki Samuels founded Shalva in June 1990 to fulfill a promise Malki, now 50, had made to God.

In October 1977 the Samuels’ second child, Yossi, became brain-damaged after receiving a DPT (diphtheria, pertussis or whooping cough, tetanus) vaccine in Israel, two weeks before his first birthday. He became blind, deaf and extraordinarily hyperactive.

“He couldn’t hear, he couldn’t see, but he was a living dynamo,” said Kalman, who was born in Vancouver, Canada, and moved to Israel during his college years, where he became ultra-Orthodox and married European-born Malki.

The Samuels family moved to New York for five years in the hope they could find better care for Yossi there. The parents rejected suggestions they put their son in an institution to allow them to give more attention to the rest of the family; they would eventually have six children in all.

At the time, Malki, who prefers to let her husband describe the genesis of Shalva, did a lot of crying, said Kalman, 53. He said she made a deal with God: “Ribono shel olam [God almighty], I’m not putting Yossi away, but I can only say if you help Yossi, I’ll help other mothers who are crying with me.”

The breakthrough came after the Samuelses returned to Israel in 1983, where they enrolled Yossi, then 8, in a school for the deaf. There they met Shoshana Weinstock, an Israeli teacher of the deaf who is deaf herself. A few sessions after she began tutoring Yossi, she ran to the Samuels’ Har Nof home, shouting in Hebrew, “He’s got it! He’s got it!” Kalman said.

She had finger-spelled the Hebrew word for “table” into Yossi’s palm, and Yossi had made the connection between the word and the object. Israeli media dubbed Yossi “the Helen Keller of Israel,” and they haven’t lost interest yet: Channel 2 is filming a documentary about Yossi that is set to air in the fall.

At that point, said Kalman, Malki decided it was “payback time,” and began creating a “unique blend of programs designed by a mother to fill the gaps society didn’t provide us and still doesn’t provide others.”

Shalva began in June 1990 in a rented apartment in the Har Nof neighborhood of Jerusalem with two professional staff members and eight mentally challenged children. By then, Yossi had no need for Shalva. Now there are 85 staff members and 18 National Service girls in an 18,000-square-foot building decorated in bright colors and Disney characters.

Shalva is open to all on a first-come, first-serve basis, said Kalman Samuels.

Last year Samuels petitioned the government to allow an Ethiopian Christian couple with two children enrolled in Shalva to remain in Israel, saying the children would die if they were sent back to Africa. The couple won United Nations recognition and were permitted to remain in the country. Shalva has also helped a Washington, D.C., church and a Dutch group establish similar programs for the mentally challenged.

Before his parents enrolled him in Shalva a year and a half ago, 12-year-old Shimmy, who has moderate retardation, spent his afternoons in a “depressing” environment at his school, said his mother, a 34-year-old Jerusalem resident who does not want her name published.

“The days were gray,” she said. “He played in the yard in the sand and dirt.” Now he spends four hours a day at Shalva, where he does hydrotherapy or music therapy, in which the children play drums and other instruments to accompany the guitar-playing music teacher. He also sleeps over once a week and stays for Shabbat once a month, giving his parents a break from the need to watch Shimmy 24 hours a day, said his mother. “There’s nothing else like this,” she said.

Naama Tzuriel finds the advice she gets from other mothers to be helpful in her new role as the mother of a child with Down’s syndrome.

“When a mother has a problem, it’s easier to speak to mothers who have the same problems,” said Tzuriel. “At the beginning it was very strange because I’m not used to receiving support, but over time you also become a supporter – you give support and you get supported.”

Aspects of the program aimed at easing parents’ lives ? like the weekly sleepover and the informal support group ? stem from Malki’s vision as a mother, said Kalman.

Although Yossi Samuels, who is now 28 and works at a sheltered workshop for the blind, no longer needs the kind of attention he did as a child, his mother hasn’t forgotten that developmentally disabled children are not the only ones in the family affected by the disability.

“I’m a parent and I know exactly what they’re going through, so I understand that it’s not only children,” said Malki Samuels. “It’s the whole unit.”